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Increased Life Expectancy of People with Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?
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Karine Baumstarck; Sibylle Del Duca; Houria El Ouazzani; Ilyes Hamouda; Any Beltran Anzola; Marie-Anastasie Aim; Marie-Christine Rousseau – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger…
Descriptors: Quality of Life, Severe Disabilities, Multiple Disabilities, Intellectual Disability
Tacit Knowledge in Medical Consultations for Patients with Profound Intellectual and Multiple Disabilities: An Exploratory Qualitative Study
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Ilse Harmina Zaal-Schuller; K. Kruithof; M. Hoogsteyns; A.M. Nieuwenhuijse; D.L. Willems; S.A. Huisman – Journal of Intellectual & Developmental Disability, 2025
Background: Patients with profound intellectual and multiple disabilities (PIMD) cannot clearly express themselves. Therefore, tacit knowledge (TK) is crucial in caring for individuals with PIMD, while it possibly also plays a significant role in medical consultations. Method: A qualitative inductive, thematic analysis was performed of 14…
Descriptors: Patients, Severe Intellectual Disability, Multiple Disabilities, Knowledge Level
Development of an Online Training Course for Government Employees to Support Families with a Child with Profound Intellectual and Multiple Disabilities
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Sim̩on T. A. Lahaije; Jorien Luijkx; Aly Waninge; Annette A. J. van der Putten РJournal of Applied Research in Intellectual Disabilities, 2025
Background: Families with a child with profound intellectual and multiple disabilities have to manage the pervasive support needs of their child, which is a complex task. By properly supporting them, we can ensure these families live a positive and meaningful life. Method: A product to support these families was developed using the method of…
Descriptors: Curriculum Development, Online Courses, Training, Government Employees
Accelerated Theta Burst Transcranial Magnetic Stimulation for Refractory Depression in Autism Spectrum Disorder
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Elizabeth Blank; Donald L. Gilbert; Steve W. Wu; Travis Larsh; Rana Elmaghraby; Rui Liu; Elizabeth Smith; Grace Westerkamp; Yanchen Liu; Paul S. Horn; Ethan Greenstein; John A. Sweeney; Craig A. Erickson; Ernest V. Pedapati – Journal of Autism and Developmental Disorders, 2025
Purpose: Major depressive disorder (MDD) disproportionately affects those living with autism spectrum disorder (ASD) and is associated with significant impairment and treatment recidivism. Methods: We studied the use of accelerated theta burst stimulation (ATBS) for the treatment of refractory MDD in ASD (3 treatments daily x 10 days). This…
Descriptors: Autism Spectrum Disorders, Depression (Psychology), Multiple Disabilities, Rating Scales
A Family Peer Advocate Model to Address Disparities in Access to Care for Minority Autistic Children with Co-Occurring Attention-Deficit/Hyperactivity Disorder
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Pilar Trelles; Behrang Mahjani; Emma Wilkinson; Nicholas Buonagura; Lauren Donnelly; Jennifer Foss Feig; Danielle Halpern; Mary McKay; Paige Siper; Joseph D. Buxbaum; Alexander Kolevzon – Journal of Developmental and Physical Disabilities, 2025
Purpose: Family Peer Advocates (FPA) are used in healthcare broadly to facilitate engagement and address disparities in care. We previously reported on the benefit of FPAs in the care of autistic children on caregiver stress. Caregivers of autistic children report significant levels of caregiver stress, in particular when associated with…
Descriptors: Autism Spectrum Disorders, Attention Deficit Hyperactivity Disorder, Multiple Disabilities, Advocacy
"So Many Other Things Improve" with Transdiagnostic Treatment for Sleep and Circadian Problems: Interviews with Community Providers on Treating Clients with Serious Mental Illness
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Laurel D. Sarfan; Zia Bajwa; Marlen Diaz; Sondra Tiab; Krista Fisher; Emma R. Agnew; Shayna A. Howlett; Sophia Oliver; Catherine A. Callaway; Allison G. Harvey – Administration and Policy in Mental Health and Mental Health Services Research, 2025
Community mental health centers (CMHCs) offer invaluable, publicly-funded treatment for serious mental illness (SMI). Unfortunately, evidence-based psychological treatments are often not delivered at CMHCs, in part due to implementation barriers, such as limited time, high caseloads, and complex clinical presentations. Transdiagnostic treatments…
Descriptors: Parents, Parents with Disabilities, Mental Health, Clinics